Advice on Iron

[sbadd]

Would like to hear from others with PA, my 14 year old daughter we think has PA, she tested positive for partiel cell antibody but negative for instrinsic factor, no one has diagnosed pa but shes on regular b12 injections, problem we are having is with iron, she has been supplementing but as soon as we take a break her serum iron drops but ferreton within range, do i keep her on supplements as off them she seems to eat more which is good as she is quite skinny and pale, latest bloods taken show low serum iron again after stopping for 3 weeks and were taken before her period?

[Damseltree]

I have just been reading articles on h. pilori infection which could answer the iron deficiency and the PA.

google.co.uk/url?q=http://w...

Sorry I'm no good at copy and paste.

Let us know what you think.

I also have the same senario.

[sbadd in reply to Damseltree]

Shes been tested for that it was negative

[Hidden]

I have the same problem. With Pernicious Anaemia (notwithstanding your daughter’s lack of a diagnosis), we have little or no stomach acid. The parietal cells are little pumps in the stomach lining that make hydrochloride acid for the digestion of good, vitamins and minerals. Iron is a mineral and is well known to need acid to aid its absorption. My serum iron is regularly at 14 (range 14 to 32) and my ferritin at 185 (range too 400) and I take 2 sachets if ssptone a day. If I stop the serum iron level drops quickly. As B12 causes absorption problems not just with vitamins and minerals but also in extracting them from food, no amount of iron rich food helps me keep replete. This may be what’s happening with your daughter and if it is then she may need to keep up the supplements.

Best of luck.

[sbadd in reply to Hidden]

Yes i think may be the case, thankyou

[Emmapemma]

Have you tried a different iron tablet? She might feel like she has more appetite with one that is softer on the tummy. Hope she gets better soon.

[sbadd in reply to Emmapemma]

Yes im going to put her back on maltafer its more expensive but better

[Cherylclaire Forum Support]

Anti-Intrinsic factor antibody (IFAB) test is often wrong - between 40-60% of the time. When positive, 95% accurate. So you could keep testing until positive, which would have to stand as an accurate result- or you could copy medical reports that state this (eg BCSH) as proof that this test is flawed. "The finding of a negative intrinsic factor antibody assay does not therefore rule out pernicious anaemia (hereafter referred to as AbNegPA). Intrinsic factor itself, which would of course be a more useful piece of knowledge, cannot be measured.

One would expect parietal cell antibody positive result and symptoms alone to be sufficient in terms of diagnosis of pernicious anaemia, assuming B12 deficiency identified. Gastric parietal cells produce intrinsic factor, so if these are being attacked, less intrinsic factor would be available for absorption of dietary B12. Helicobacter pylori having been ruled out as the problem, what else could the problem be but PA ?

Ferritin, folate and Vitamin D would be the most likely low-range/deficient levels to look for - a lot of people struggle with keeping these in-range. Keep ferritin and folate in top 1/3 of ranges ideally I was advised, and it certainly helped me with some persistent problems (like hair loss and bleeding gums). Ferritin the hardest one to improve for me.

Have you also got a family history of PA ?

Autoimmune diseases seem to love company, so thyroid, vitiligo, psoriasis etc can sometimes also ring bells with families.

Perhaps there is some reticence in diagnosing PA because of your daughter's age ? If you are in need of support, I would suggest joining the Pernicious Anaemia Society if you haven't already done so. They may be able to help you get a diagnosis and appropriate treatment for your daughter.

[sbadd in reply to Cherylclaire]

Thankyou no previous family history but i do have underactive thyroid